Tuesday, December 27, 2011

Well, friends, Christmas has once again come and gone. And as I look at the mess around me, I am reminded of all of our Lord's many blessings on this family. 2011 has been a significant year in the life of my little family, one that we will never forget. The new year brought with it hope. Hope for a bright future and a joyful reunion with Cole, who had been deployed since April 2010. He came home in April 2011, and I thought that finally, our lives would settle down and we could be "normal" for a bit. Boy, how wrong was I!!! HA! We decided to put our home on the market that summer, and about the same time we started to investigate why Ava was not developing typically. There were many things going on with Cole's civilian job as well, and he was gone even more than usual. Needless to say, this past summer was a whirlwind! Fall came, and with the changing of the leaves also came a changing of seasons, of sorts, in our family. Each challenge our family met was followed almost immediately by a blessing of some sort. On the heals of Ava's diagnosis, literally, within a matter of two weeks, came word that Cole would have a new job. One that would not only allow him to be home full time, but is also his "dream aviation job" and one that he has talked about from the first time I met him. What a blessing that was! God is so good!

I began thinking about my 2012 Resolutions around Thanksgiving. So much was happening at that time- both uplifting and heart wrenching, that I started making decisions about things in my life. Some personal, some pertaining to relationships, and some that are continuing resolutions.

On my list, you will not find the typical "loose weight, eat better, ect." resolutions because, honestly, that is not where my focus is right now. I would love to drop a few pounds and learn to love all things green and leafy. BUT realistically, I have more important things in my life to worry with at this moment. Maybe next year! ;)

So here are my New Years Resolutions for 2012:

*Continue to strive to place my relationship with the Lord, my relationship with my husband, and my priority on my child first and foremost. In that order. Everyone else, although I love some of them dearly, are really just peripheral.

*I want to continue to weed out the negative, manipulative, and hateful people in my life. Regardless of how I know them. I have no room for them in this new life as a special needs mother, and my daughter certainly doesn't need them. I will not allow it. I am done with those toxic people.

*I want to continue to and do a better job of advocating for my child and fighting for her to have a better, more fulfilling life and future. There is so much hope for individuals with AS, and I want her to be a part of that!

*I want to do a better job of educating people not just about AS, but about special needs in general. There are so many syndromes and conditions that fall under the "special needs" category, but there are some things that, as I get to know more and more special needs parents, obviously transcend the conditions and effect all of us. Like what to say (and more importantly, what NOT to say) to a parent with a special needs child.

*I want to do a better job of focusing on my marriage. Cole spends so much time at work, and I spend so much of my time caring for Ava or dealing with Ava's doctors/therapists/specialists that it is difficult to make time for each other. And I know that we/I can do a better job of that.

*I want to do a better job of balancing being a gracious person who is willing to answer questions and not be offended, with being someone who stands up to people who say or do hurtful things towards my family and my daughter.

*I want to spend more time reading, not only my Bible, but in general.

*I want to do a better job of evaluating friendships that have lived out their time, and letting go of those. I have always said that I would rather have 3 or 4 amazing, wonderful friends than 300 fair weather friends. Through this diagnosis, I have seen, in the little and big things, who is who. And I need to be willing to accept those realities and let go.

*One sort of practical resolution is that I would like to be a better housekeeper. I have never liked doing chores, although I have gotten much better because I feel better when my house is clean. But I really still hate doing laundry and dishes. I need to be better!!! :)

*I would like to really think and consider my purpose in life. Obviously I am meant to be Ava's mother and advocate. But I feel like I am being called to do something bigger. Something more. And I don't know yet what that might be, but I hope to figure that out in 2012.

I know many people fail at their resolutions because they have no accountability. I remember back when I was a regular gym goer, I used to *loathe* January because it was so packed and the treadmills were always taken. But I knew that if I just waited until February, it would be back to the same ole' dedicated few. And that is how I sort of feel about all resolutions- they will fail unless you have someone to ask you from time to time, "hey, how are you doing?" And that is what I am asking of you. If you think about it, please feel free, from time to time, to hold me accountable to my resolutions. These are not typical resolutions, but honestly, my life is no longer and never will be "typical." In many ways it is harder and more challenging than a typical life. But, it is more wonderful, fulfilling, and amazing in so many other ways.

Sunday, December 18, 2011

...or at least I hope they will be!!! HAHA! Here lately, it feels like we just keep spending money! I hate feeling like that, but at the same time, I feel so blessed that we are able to provide things for our daughter that will help her live a more functional, safer, and more enjoyable life!!!

The child is getting a ridiculous amount of toys (almost all geared toward sensory) from family, mommy and daddy, and Santa! But there were a few items that I wanted to get for her that we didn't add to her Christmas list. And we decided that we could just roll them into the spending of December so that *hopefully* January will be a "light" month! We shall see. ;)

This is a weight blanket, made with frog beanbags. I know it is hard to tell from the photo- I will take a better one when ours gets in. But they have one of these at our therapy clinic, and Ava LOVES it! She will lay on the swing, under this 10 lbs "blanket", and let us swing her for a long time, while she looks through the holes. It is so cute!!! It was a little pricey, as I am learning all things therapy or "special needs" are, but if it helps her, I am so glad to be able to get it for her! Really blessed!

Baby gates. These are extra tall and extra wide, and mount to the wall. Our hope is that we can put these (we ordered two of them) up and keep Ava in the living room with the hallway doors closed. This will keep her out of the kitchen, our bedroom, the pantry, and the dining room/foyer area. It will also give mommy and daddy a much needed break from having to chase a very fast and curious angel all over the house!!! Plus, according to the reviews online, they are very stylish looking. I hope so...if you would have told me three years ago that I would be installing gates in my house, I would have told you "no way- my kids will just have to learn the rules!" Oh, how children change you!

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This is our new high chair. After doing a lot of research and reading, we decided to order the Stokke Tripp Trapp chair. We also got the baby seat attachment as Ava is so skinny and I think it might work well for us. But her high chair is getting to be hard to clean, and we want her to be at the table with us. Many online sources and other angel parents/special needs parents LOVE the Tripp Trapp because it grows into adulthood with your child. They come in many colors, but I ordered it in this gray color. It is nice and neutral, and I figured it will go with just about any decor I decide to change to. ;)

And of course, my favorite thing of all- My ADORABLE ANGEL!!! She is the light of our lives, and we are SO very blessed by her each and every day!!!

And lastly, I have to brag for a moment: Last night, we went downtown with my family to eat and ride the trolley. I wore a hat, and all night Ava was fascinated by it. Well, tonight, my hat was sitting on the couch, and Ava was standing there playing with it. And the next thing we knew, she had put it on her head! The right direction and everything! We were not fast enough with the camera, but we were so proud!!!! That is a HUGE deal for Ava to not only know the purpose of the hat, but to have the motor skills to put it on her head!!!! YAY AVA!!! Way to go baby girl! We love you!!!

And if anyone is interested in any of the items I talked about above, here are the amazon links, which is where I ordered from... (I *heart* amazon.com!!!)

Monday, December 12, 2011

This is our first Christmas in our new home, and as excited as I was to decorate for the holidays, I knew that

A. I have a toddler who also has special needs- the combination of which makes many decorations impractical for my sanity.

B. I have like, ZERO time to decorate these days.

C. The decorations that FILLED our old house don't really go as far in our new, larger home! HA!

So I kept to the Army's motto of KISS (Keep It Simple Stupid!)!!! But I think it is festive in a very livable and comfortable type of way! So without further ado, here is our Christmas 2011....

Ava's tree in her room. One of these days, I am going to get a tree skirt for her!

Entry table. I meant to wrap baby Jesus. Haven't gotten to that yet. But we want to start a family tradition of unwrapping Jesus and placing Him in the nativity as the last gift that is opened on Christmas Eve (which is when we do our family Christmas)

I love this Nativity! Got it on sale at HobLob last year after Christmas and it was the first thing I put out this year!

This was the wreath that was on our front door last year. I painted a canvas this year. Not sure I am going to keep this much longer, but I thought it was a pretty wreath, and really did look good on our old black door with brushed nickel hardware! Now it just dresses up the never used coat closet!

I painted these today while I was working on a HOG canvas for someone. I had the colors out and needed something for this table. Turned out pretty cute! The white has glitter.

Sideboard in the dining room where I serve desserts or drinks for parties.

Our tree in the dining room. I love having a house where our tree can be seen from the street!

Please ignore all of my Christmas serving dishes- I am getting ready to host Bunko this week! The three big trees are the only things that live on our table. Got them at Kirklands for $18 (ALL THREE OF THEM!) I was stoked!

Mantle. It has lights, which I didn't plug in (obviously).

My kitchen memo board, which I have a verse on for each season. And my cute Santa! Love him!

I have bar place mats for each season too! Brings a little fun to the kitchen!

Table runner for the breakfast table. It is reversible (as are the place mats)- with ornaments on one side and the stripes on the other. FUN!

Friday, December 9, 2011

I am sorry I haven't written in a bit. With Thanksgiving then getting sick, things have just been crazy! Shortly after Thanksgiving, I came down with a little cold that, in true Rachel-December fashion, turned into a sinus infection. Then this week, our entire family came down with an awful stomach bug. So this week has just been a total wash. Thankfully I think we are all on the mend now (knock on wood). Cole is on duty at work today after missing the last two days. Poor guy, but thankfully they were pretty understanding with him. I am sure they don't want this mess either! He said he feels much better today and even ate a burrito. Which still sounds gross to me (and I was sick Tuesday night) but I definitely got the worst case. Ava got the most mild case, thankfully!

I am running short on time, and will write more soon. But I just wanted to say, if you are not doing anything tomorrow evening, to be sure and watch NBC at 7 CST! The first ever American Giving Awards will be aired, and during the show, Collin Farrell (who has a son with AS) will be featured along with the Foundation for Angelman Syndrome Therapeutics! This is an amazing awareness opportunity for the Angelman Syndrome community, and I ask that you all tune in and help spread the word! What I really want people to understand is that the therapeutic treatments for AS possibly (likely, actually) have a much wider application. Other neurological disorders like Autism and Alzheimer's will likely be positively impacted by the research!

So tune in and watch tomorrow, December 10th, on NBC!!! I have my DVR set and can't wait!!!